Octreotide Saves The Day

[persephone]

Hi ladies. Octreotide has totally saved my bp. I still get teachycardia but minus the terrible syncope. Next week I'm starting mestinon.

Have been in hospital for a month now- the best one EVER. And I'm a hard woman to please, as you know!

Anyone else ake octreotide? Do the crazy GO side effects - aka looking 9 months pregnant- go away?

Please tell me they do...!

[Guest tearose]

I am so sorry you had this terrible relapse!

I have no experience with that drug but hope it works for you.

Keep getting stronger. We need your scholarly skills here in the USA.

[sue1234]

Wow to anything that helps someone! I don't know much about it except for use in some other conditions, such as carcinoid and/or some other endocrine things. What made them start that on you and specifically to help what?

[goldicedance]

Perse:

So sorry to hear that you have been in hospital for such a long period. I'm hoping that things settle down.

I used Octreotide for about a year (1993-4). I had very good success with it. I did have the GI upset for awhile; that eventually subsided. I eventually stopped because of HBP coupled with gall bladder problems probably triggered by the octreotide. I was using the monthly octreotide with short acting as needed. After I stopped octreotide, I was put on Mestinon and now Mestinon slow release. That also did me in with GI problems...but I'll take that compared to the other problems of POTS.

Let us know how you are doing.

Lois

PS I never understood why so few people tried octreotide-- perhaps it was the cost. I was driving 5 hours to see Dr. Hoeldtke at West Virginia University who was one of the first to use octreotide. Google Hoeldtke and you'll find lots about octreotide.

[McBlonde]

Oh my gosh, he is the one that dx'd my POTS in November and Octreotide is what he wants me to try next. Isn't it given by injection? He's practicing at LSUMC now.

[goldicedance]

I was wondering where Dr. H was. He is quite an interesting person and doctor. Are you going to try Octreotide? It gave me several great months.

Lois

[McBlonde]

I don't know, Lois. I have had so many side effects with the pills I have tried so far. The last time I felt "good" was in November after I had a myelogram and they have me an IV in recovery.

[janiedelite]

My mom takes octreotide subQ for her carcinoid syndrome, but she's been on IM injections in the past. The IM shot is called Sandostatin LAR and lasts about 28 days. The SQ shot is given in your abdomen and lasts a few hours (it's like an insulin shot).

Yes, the GI side effects do wear off, but it usually takes up to a few weeks.

It works primarily by causing splanchnic (abdominal) vasoconstriction. I did take one small dose (50mcg) and felt more awake than I'd felt during the last 4 years of being sick. I also had terrible GI distress for a couple of hours, but I'll never forget how AWAKE I felt. It was like "Wow! I've really been sick and tired for a long time!"

My mom has had to have her gallbladder out because of stones caused by the octreotide. Another main side effect is insulin resistance, but her HgbA1C's and glucose checks are still okay, just slightly borderline high.

I'm glad there are docs willing to prescribe this drug for dysautonomia. As for me, I could pursue getting it regularly but I don't feel that I'm ill enough to warrant the side effects (particularly developing type 2 diabetes). But if you need octreotide, just be sure to get your glucose checked regularly.

[persephone]

Ladies, I'm out of hospital. Octreotide is my MIRACLE drug. I feel better than in years. No tachycardia, no hypotension. No crushing fatigue. It's amazing.

Anyone out there who is looking for new drugs to try, get on octreotide- it makes ALL THE DIFFERENCE.

I am particularly hard to treat because my bp actually FLATLINES altogether, in addition to the postural tachycardia. But it's working even on me...

Without the forum I'd never have heard of octreotide, or known to ask for it.

THANK YOU for giving me my life back.

How can I ever repay you all?

[goldicedance]

don't understand why more of you haven't asked for a trial on octreotide....I took it several years ago.

Dr. H seems to be the only doctor in US who is using it for POTS. What a shame....

Lois

[mkoven]

Great news! Does that mean you're off procrit? Do you have to inject yourself? Glad to hear things have turned around for you.

[lauralulu]

That's awesome! I'm so happy for you!

[ramakentesh]

Yeah ive never heard of a bad experience with octreotide. Problem is it is very expensive so doctors / hospitals dont mention it. Id love to try it but it has never been prescribed in Australia as far as I am aware.

[persephone]

EVery other Doctor br this one told me there were no more drugs left to try. They left me in a state where I was unable to work, walk, or even eat. Just goes to show how little they think our lives are worth, because Octreotide is a very expensive drug. The monthly LAR injection is about ?850, and the short acting ones are aanything from ?300-900 a month. My consultant said he cared about m and not budgets. He was a total breath of fresh air.

It really has been amazing.

I'm off procrit. In fact, procrit was making me much worse. Not only did I build up a tolerance to it. I felt the ill effects of it too- because it was stimulating red cell production at an enhanced rate, it CAUSED ANAEMIA - the one thing it is supposed to treat- by using up my iron stores! I'm a lot better now I'm off it. And the colossal 70 lb weight gain I had on it is beginning to shift too.

Everyone, I say to you KEEP ON ASKING ABOUT OCTREOTIDE. MAKE THE DOCS SIT UP AND LISTEN. I WILL BE WRITING TO THE USELESS DOCTORS WHO DENIED ME THE DRUG AND TELLING THEM I HAVE A LIFE BACK NO THANKS TO THEM.

Good luck!

ps the GI stuff did calm down, but I'm taking buscopan and peppermint oil to deal with it.

[futurehope]

Thankful said:

My mom has had to have her gallbladder out because of stones caused by the octreotide. Another main side effect is insulin resistance

This is one of the reasons I do not ask for this drug. If the quality of my life warrented a try, and I were willing to have potential side effects, and willing to spend the money, I would try this drug.

[wareagle]

Just a quick question about the gallbaldder side-effects.

If you no longer have your gallbladder is this med safe....or does it potentially cause additional problems? I'm thinking spinchter of Odi issues? I've been wondering about this drug for awhile. It's on DINETS main page as a possible treatment option. I always thought it was only benificial with blood pooling following a meal. Guess this isn't the case?

I'm so excited for you Persephone!!

[spaceorca]

My son took octreotide for a short time for his Crohn's disease. That was before his POTS was diagnosed, and I don't remember the octreotide helping any of the symptoms. But everything was such a mess back then, it was hard to know! I do remember that the SC injections weren't too difficult--we did them at home, and you could do them in the thigh or abdomen.

Here is a summary from Pub Med of an article published by Dr. H on octreotide. It does sound interesting although, as so often with POTS, it seems to work wonderfully for some but not for others:

Clin Auton Res. 2007 Dec;17(6):334-40. Epub 2007 Aug 31.

Treatment of autonomic neuropathy, postural tachycardia and orthostatic syncope with octreotide LAR.

Hoeldtke RD, Bryner KD, Hoeldtke ME, Hobbs G.

Dept. of Medicine, West Virginia University, One Medical Center Drive, PO Box 9159, Morgantown, WV 26506-9159, USA. rhoeldtke@hsc.wvu.edu

Abstract

The purpose of this study was to determine whether autonomic neuropathy and the postural tachycardia syndrome can be treated with octreotide LAR (Long Acting Release). This was an open-label pilot project. Protocol 1 Patients with autonomic neuropathy (n = 4) were given increasing doses of octreotide LAR once a month for three months. Blood pressure was measured in the sitting posture every two weeks. Pretreatment mean blood pressure averaged 83.8 +/- 7.1 mm Hg. After four, six and eight weeks of therapy the blood pressures averaged 96.3 +/- 6.4, 98.2 +/- 6.1 (p < .025), and 104.1 +/- 3.1 (p < .025) respectively. Therapy led to a dramatic improvement in symptoms in one patient but another had an unacceptable elevation in supine blood pressure. Protocol 2 Patients with POTS or orthostatic intolerance were given 10, 20, or 30 mg of octreotide LAR over three months. Seven patients entered and five completed the study. After two months treatment, standing time increased from 36.0 +/- 9.2 to 59.2 +/- .8 minutes (p < .01). Heart rate in the standing position was suppressed from 106 +/- .83 to 93.2 +/- .8 beats per minute (p < .05). Orthostatic dizziness and chronic fatigue improved. We conclude that octreotide LAR can be used to treat autonomic neuropathy but there is a risk of an excessive pressor response. Octreotide LAR improved standing time and suppressed tachycardia in patients with orthostatic intolerance.

[pat57]

great news

[kschoon777@yahoo.com]

I've been on octreotide for about 2 years now and I can't function without it. I was in a research study at Vanderbilt and that was the drug they recommended for me. I just recently changed insurance and my prescription has been held up because of the pre-approval process. Midodrine does help some, but I need the octreotide if I want to stand for more than a minute. I've been without it for about a week now and I can really tell the difference. I'm almost bedridden without it.

[ramakentesh]

Are you using the short or lond acting variety? What study are you involved in specifically?

[kschoon777@yahoo.com]

Are you using the short or lond acting variety? What study are you involved in specifically?

I'm using the short acting subQ injection. I take 3 shots a day and they last about 3 hours. The research study I was in at Vanderbilt was the study of different drugs including placebo and water. They did a sweat test, monitored by blood pressure and hr and lots of other tests. I have Pure Autonomic Failure. They confirmed the test results were consistent with PAF.